Neuroendocrine Pancreatic Tumors with KIT Missense Variant Exon 10 GOF

I had no real side effects to prrt. I was glad to get off chemo for 2 days every other week and take prrt, 6 hours every other month.

Hello @mmar2025, and welcome to the NETs support group on Mayo Clinic Connect. I can understand your frustration about going through treatments when you have no symptoms. I had no symptoms when my NETs were discovered during an upper endoscopy, but subsequently, I have had three surgeries for NETs.

I see that @zacharycat has already posted with you about his PRRT treatment. I would like to invite @dbamos1945 and @vinnie694 to this discussion, as they have also undergone PRRT.

I see that your NETs have a rare variant. Are you seeing a NETs specialist? If not, it would be wise to seek at least one consultation with a NET specialist to ensure your treatment is the best possible. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Carcinoid Cancer Foundation with NET specialists in the U.S. and worldwide: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I look forward to hearing from you again. Will you post any questions or concerns you have as you go forward?

As far as side effects from the PRRT treatments, I really didn't have any I could totally atribute to the treatments. I didn"t experience any nausea during treatments. I was tired after but I also received my 2 Ocreotide injections the same day, which work great on eliminating my carcinoid but I get a severe respiratory reaction so I take a double dose of Benadryl
before the shots.. My doctor had a scan done after the first 2 sessions, and that showed the treatments were working, no new tumors, and no growth
on the existing ones..After the last treatment another scan showed no new tumors, no growth, and some of the larger ones were shrinking and some if the smaller ones were barely visible..I go for another scan in April to see if the treatment is still working..Hope everything goes well for you...

@vinnie694

Thank you. I know everyone is different. Can you tell me what Grade/Stage you were at when you first started? Sure hope everything goes well for you. I appreciate that you took the time to answer me.

Sure I was and still am at Stage 4 Grade 2 ...

@vinnie694

Thank you again. Keep in touch if possible.

will do..

@mmar2025: My PRRT was because the latest MRI showed 40% tumor progression from the 2021 diagnosis of well-differentiated, Grade1, Stage 4, KI67< 1% - primary small intestine with liver metastases. I researched and consulted with many before I chose PRRT Lutathera (Beta) treatment from June-December 2024. In Jan. 2025, my 1st MRI after PRRT it verified my NET tumors had significantly reduced in size and as of Jan. 2026 there is still further shrinkage. This radionuclide infusion therapy can affect Blood Platelets, so it is wise to watch blood labs heretofore. I will have Lanreotide 28-day shots for life. I also have had MRI w/wo Eovist contrast every 3 months to remain vigilant for tumor progression. Fatigue made my regular schedule difficult, so during treatment I made fighting cancer my main focus. When I tired easily, I would rest, read, meditate and had small light meals - best choices of good nutrition.
It’s now Feb. 2026 and the fatigue has slowly been replaced by my’ol schedule of meetings, yoga, TaiChi, cooking, crocheting, socializing, cards, etc. I am feeling more like the pre-cancer ME - even though there is no cure.
I am not well versed with Pancreatic NET, but make daily effort to research and discuss all NET treatments. NET tumors can reappear anywhere, anytime, so we will need to stay informed.
You will make the best treatment decision when you consult with NET specialists and peer patients.
Best of health to you..

@dbamos1945 Thank you for your in-depth explanation. I appreciate that. My journey begins tomorrow.

@mmar2025 I've always considered it a journey also, My friends laugh when I relate my situation this way..Upon diagnosis "I received my airline ticket to the next life, it's been 3 years and no seat assignment! and my hopes and prayers are that I can postpone that boarding pass!! My thoughts an prayers are with you..